Recently, a well-known celebrity publicly disclosed that their four-year-old child had been diagnosed ‘with autism’. Heartbreakingly, they expressed their grief, implying that their dreams for their child and family were shattered. This candid confession resonates with many families who, upon receiving a similar diagnosis, experience an overwhelming sense of loss, largely due to outdated views and misconceptions about autism that are still prevalent in society.
One cannot ignore the impact of these misguided beliefs on the expectations set for these children. But it is crucial to understand that these delays do not translate into limitations on the child’s ultimate potential. It is not a sentence to stagnation but rather an invitation to navigate the world differently.
Alarmingly, low expectations have become synonymous with an autism diagnosis. These children are not given the same opportunities as their peers and are frequently written off prematurely. This low bar not only undermines the child’s potential but also feeds a cycle of underachievement that is more a product of societal bias than intrinsic limitations.
As adults who self identified then were diagnosed in our thirties, my husband and I reflected on our own experiences. We once wished that we had known we were autistic earlier, so we could better understand ourselves and develop coping mechanisms to navigate the neurotypical world. Yet, as we continue to see such attitudes towards autism, we almost feel a relief that we were not diagnosed earlier.
Our struggles at school and throughout life were substantial. But presumed to be neurotypical, we were given opportunities to grow. Had we been diagnosed as children, particularly during a time when understanding of autism was even more limited, we could have been boxed into societal labels and been subjected to the same low expectations that are currently applied to autistic children. We are now confident that had we been diagnosed, we would not have thrived in the face of such artificially imposed limitations.
As parents, we acknowledge that our own children faced significant developmental delays, and continue to have difficulties. Despite being capable of speech, our eldest child communicated mainly through echolalia, and our youngest would often become non-speaking. There have been lots of meltdowns over the years, and we continue to experience struggles with communication and emotional regulation… but overall, there has been so much progress, and we are grateful to have such beautiful, polite, happy children. We try to offer every opportunity possible to support their development, and want them to learn how to understand and advocate for themselves.
The tragedy narrative was adopted all around us from so early on, but we refused to get sucked into this negative loop of thinking. We knew our children were capable, just as we were… so instead, we focused on identifying their unique needs and continuously strived to accommodate them with nurture and support, while maintaining high expectations and guiding them towards their full potential.
When my eldest was smaller, we were told he wasn’t capable of learning and to prepare for a life in which he would never be independent. I won’t say this didn’t trigger doubt or fear, and that tears weren’t shed… but in our hearts, we didn’t believe it, and strived to prove everyone wrong. He was pushed out of the education system and we were left to address all of his very complex needs… alone. We educated ourselves as much as we could to meet his social, emotional, sensory, gross and fine motor skills… essentially becoming his live-in SaLT and OT, albeit unqualified. Luckily, as a teacher with extensive experience working with SEND children, I was well placed to meet his educational needs… but due to coexisting conditions such as PDA (Pathological Demand Avoidance) and school based trauma, this journey came with further challenges and was still a huge learning curve for me.
The aforementioned celebrity apparently expressed a fear that they wouldn’t be able to share experiences such as cooking with their child. It is essential to clarify that a diagnosis of autism doesn’t mean children, who might be developmentally delayed, will never be capable of participating in family activities or learning experiences. They just need support to develop at their own pace, with their unique needs being met and their interests being utilised.
Reading about these fears really upset me. In part because I understand the mental space the parents must be in right now, but also because this reinforces the low expectations that people have of our children. Just as they did mine! In recent times I have been described by professionals as being ‘very knowledgeable’ and ‘ahead of the curve’ with regards to the support I have provided to my children, with one saying ‘Thank goodness you didn’t listen!’ If I had believed what I was told… I can only imagine where my children would be now, and it genuinely hurts me to think that there are parents out there feeling so scared and broken about their children receiving an autism diagnosis. It hurts me further to know that so many children are written off and won’t be encouraged to meet their full potential… simply due to external forces imposing their detached and out of date views.
Somebody recently suggested, after being around my children and seeing how well they were doing, that I couldn’t possibly understand what it was like to have a child with complex needs… like theirs. Knowing where my children started, how people viewed them and what I’ve had to put in to get them where they are… with no support… this comment cut deep. But I understand that they are at the beginning of their journey, and are very heavily influenced by the people around them they view to ‘know best’… mainly teachers and doctors. And I understand why they have trust and confidence in these people. But the sad reality is that while there are some great practitioners out there, we are in a time where too many view our children as deficient and fail to see them as the capable human beings they are.
Just like their neurotypical peers, autistic children can participate and excel in a variety of activities, even those that might initially appear challenging. They may need a bit more support and accommodation, but their capacity to learn and grow should never be underestimated.
I support and promote the paradigm shift in society’s approach to autism, where we respect, encourage and allow children to flourish in ways that work for them, rather than being confined by the limits of outdated perspectives. This shift should start with higher expectations and an environment where an autism diagnosis is not seen as a tragedy but rather a variation of the human experience.
The world of an autistic child is not a world of lost dreams. Instead, it is a different path that can still be filled with so much joy and fulfilment. So, to parents who feel overwhelmed and afraid, I empathise with how you are feeling, but urge you to please speak to autistic adults and parents of autistic children like myself!
Picture: Here is a picture of my children and I baking. We love cooking and baking together, and have used this to nurture and develop so many skills over the years. I was working on a book to demonstrate how cooking can be used to support all learners, but particularly those who are neurodivergent. It would be so amazing if the celebrity I mentioned embraced and developed this concept further. I really wish you all the best… and please reach out if you ever feel the need to.
